Posts: 8

Topic: We are beginning to panic

Well, just when we thought we were getting somewhere...it seems we have been pushed back so far...Lee wants to give up. We went for a PET 10 days ago, our oncologist went on vacation and failed to give us the results... needless to say, we contacted the Imaging clinic and they were mortified that they let the ball drop like that...so they said that they could legally send us the report by weeks end to view ourselves....on top of that the same dr. sent all of the information needed to enter Mayo in Rochester to Florida!!!! We were wondering what the heck was going on...so we finally got in contact with them and they have no idea who we even are...they screwed up AGAIN...we feel that they just don't give a rip now that we need to go out of state...they are toying with Lee's time and it is not ok!!! We need some guidance and help from any of you...we need to know if anyone has gone to Mayo in Minnesota, and if so how in the world can we get the ball rolling again....we don't have all the time in the world and we are beginning to panic....there are a hundred phone numbers to choose from...but none seem to coincide with our medical needs...we are panicking....anyone who can give us a little hope and direction would be great, cuz we aren't getting anywhere with the medical side of things. Thanks so much...

Re: We are beginning to panic

My wife (Kathleen) saw Dr. Steven Alberts at Mayo Clinic in Rochester. His phone number is 507-284-8964 and that will get you someone in the oncology department that should be able to help. We were very pleased with Dr. Alberts and I would highly recommend him.

Re: We are beginning to panic

OHHHHH I am so angry for you!!! Perhaps you need to go to the hospital and pick up copies of everything yourself-scans, bloodwork, lab reports, the whole shabang and send it priority or whatever it is called when it has to be signed for directly to Mayo. I would also write a letter of complaint to the hospital so that they know you mean business. Even if you end up going out of state for treatment, it is likely that scans and some bloodwork may still be done locally and they need to know you are serious about being given good treatment. Also make sure you keep in contact with your local doctor when you start being treated out of state. I have had two friends who are both doctors stress to me how important it is for doctors to know that other doctors are involved and looking over there shoulder. That applies both ways so it might be advisable for your Mayo doctor to talk directly with the local doctor so both ends know that everyone is looking...does that make sense. How embarrassing would it be if the Mayo doctor called and questioned them why it was taking so long to get the paperwork?

Good luck HEather. I have a huge case of PMS and would love to yell at someone so if you want, I can call them.

Re: We are beginning to panic

Heather - I second Bill's recommendation of Dr. Steve Alberts. He's actually the Chair of Medical Advisory Board for The Cholangiocarcinoma Foundation, and I know he'll get you through the system quickly. I'll email you separately as well.

Re: We are beginning to panic

OH MY GOODNESS! You guys ROCK! Lee smiled and gave me thumbs up for the first time in days...if you could see my heart it is filled with much thanks and smiles and love for you...you are a true, true , true blessing to our family...thank you, thank you, thank you with all my heart and soul!!!

Re: We are beginning to panic

Heather, Here is another number and e-mail for Mayo in Rochester directly to Professor of Surgery, David M. Nagorney, MD Mayo Medical School. He works pretty closley with Dr. Alberts. Phone: 507-284-2644 Fax:507-284-5196. E-mail for a direct response from him some times takes a few days:nagorney.david@mayo.edu . He performed my liver and galbladder surgery over 9 years ago. Due to mets I have, he is unable to do anything for me now. I have to rely on systemic chemo now. I don't recall if you have any mets involved or how much. He is a gastroenterologic surgeon with years of experience under his belt. He tells it like it is and doesn't beat around the bush. Best of luck! You can attack from all angles now. You can tell him it 's a referral from a patient of 9 years ago. If you go through him for another surgical opinion and he feels he can't do you any justice ,he'll refer you directly to Dr. Alberts cutting out the red tape sorta to speak. He'll probally be surprized I up and still running strong. Lee it's time to put up your dukes and perservere, hope and miracles are endless!God Bless,Jeff G.

Re: We are beginning to panic

Sorry for that red tape run around that you are experiencing as if dealing with the actual illness wasn't challenging enough... When surgery was still an option for my sister, Dr. Nagorny came very highly recommended to us as well. We had never thought to go out to Mayo, but wanted a second opinion and Dr. Nagorny's office was very very helpful and accomodating. Good luck and hoping to hear good things...

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